Journal Entry


Monday evening, June 13, 2005

“It’s like all of the other horses are just standing there and Afleet Alex is the only one running.” by Christi Thomas, watching the Belmont Stakes – June 11, 2005

Hello, sweet Christi fans!  Thanks for checking in!  God’s good blessings have continued to surround us.  How fortunate Shayne and I are to still have Christi living in our home and not in our Savior’s.  Despite the cancer or her chemo, she remains pain free and incredibly happy.  Recently, we took the girls to our annual Summer Drive In Movie where we watched Madagascar, and Shayne and I heard, “I just love summer,” sweetly come out of Christi’s mouth as the girls were perched on top of the van munching on popcorn.  It was priceless!

A very pleasant, glorious and surprisingly good report of dental news was recently handed down to Christi and tops our list of excitement this month.  I took her to the dentist where a full set of dental Xrays was conducted.  Knowing fully that one of the side effects of the chemo and radiation treatments is the fact that adult teeth can be totally destroyed or damaged I wasn’t certain what we may discover.  Well, the fabulous news is that FOUR adult teeth which should have been formed and in place by now appear to have been destroyed as they are totally missing – no trace of them, GONE! (Wouldn’t that be great if that were her cancer?!  Wishful thinking!)  And get ready for this one – the four teeth that are missing are her four wisdom teeth!  We Praise Him!!!!!!!!!  And also good news – all of her other adult teeth appear to be perfectly formed and ready to sprout once her 12 baby teeth depart.  I emailed her oncologists in NYC and at CHOP who were incredibly pleased and very surprised by the good news that she has been spared this side effect of cancer treatments at her young age.  “Trust in the Lord and do good.”  (Psalm 37:3)  Thank you, Lord for protecting Christi from this treatment side-effect.

Both girls would agree that playing with Mr.& Mrs. Cook’s beautiful golden retrievers ranks very high on their lists of wonderful events for this past month.  Shayne and Webby ran Alan’s Memorial duathalon which consisted of a 5K road run, 20K bike race followed by a second 5K cross country run.  Whoa!  Very impressive, boys!  Of course, the way they ran the first 5K running side-by-side and cracking jokes made Alicia and I wonder if they were really competing or just out having a good time together.  Regardless, we were very proud of them and had fun cheering them on!  Eric had a great time after he finished the race and then went to cheer (or was it to tackle?) Shayne as Shayne neared the finish line after him.  Way to go, boys!

After a wonderful Memorial Day Weekend spent with Grandma Nee Nee at the lake, the school year ended June 2nd with tears pouring down my cheeks hugging some precious 8th graders who dropped in to say goodbye as they’ll be moving on to the high school next fall.  The school year ended for Christi on a much more upbeat note as she skipped into my classroom and announced, “Now it’s on to what I’ve been waiting my entire life for – 4th grade with Mrs. Smith!”  Boy, I wonder if Mrs. Smith knows the pressure is on.  Hee hee!  She had a wonderful year with Mrs. Kiess in 3rd grade and I’m amazed to look back at her pictures from August; she looks sooooooooooo little.  What a great year!  Shayla, who also had a fabulous year with Mr. Bumb, said she was ready to be a first grader; however, only after her summer vacation.  (Only Shayla!)

Christi’s blood counts were recently drawn from her mediport inside her chest.  They were fine.  Her LDH which measures tumor activity was 230.  The normal range is 100-190.  In April it was 178 and in May it was 207 so now for June it is 230; somehow I do not like this trend and I pray it means nothing.  Her other blood counts were all nearly normal:  hgb. 10.8 (low, but okay), white 4.7 (normal), platelets 164 (normal), with a normal ANC of 2,500.  Other than an occasional headache, she’s had no complaints.  Of course each headache frightens me beyond belief, but we’ll just keep taking this one day at a time and giving Him praise for getting us this far!

Shayne and Christi again “took the show on the road” and went on WTTF (live local Tiffin radio) to promote the Poker Run and the Lemonade Stand.  They both did a great job!  Christi talked about her first meeting with Alex Scott as tears rolled down my face listening to the broadcast and Christi’s sweet comments about Alex and her wonderful Mother, Liz.

The 3rd annual Christi Thomas Poker Run was a fabulous success and we thank all of the incredibly hard working, loving volunteers who organized, shared their talents and worked the event.  The Make-a-Wish Foundation is a tremendous organization and we were glad to be able to give back to a great group who gave so much to us and other families living with life – threatening illnesses.  With all of the motorcycles lined up at the south end of town, our family was given an awesome convertible to lead the parade through town.  Shayne drove behind the Tiffin Police cruiser and the girls waved their flags in the back seat.  It was very special.  As we neared the far end of town, we hopped out and Christi stood by the road holding up a huge “Thank you! Love, Christi” sign she made for the bike run participates.  They roared by, beeped and waved while tears poured down my cheeks.  It was a most incredible sight and sound and very emotional!  God’s people are so loving and we have been incredibly blessed by them.  I know of many Mothers who would love to be wearing my shoes.  We are incredibly lucky to have Christi still alive.  When the Poker Run was over and the bikers returned to the VFW Christi was invited to play with “8up” - a great band with huge hearts!!  A big case of “stage fright” took over, but a sweet band member helped her feel better and she had a great evening too.  They even gave her a band shirt “to grow into”.  Precious!

With lemonade as the weapon of war, Christi’s stand was set up on Friday, June 10th in conjunction with the nation-wide Lemonade Days for Alex’s Lemonade Fund.  Our deepest thanks to the Advertiser Tribune, Open Market, WTTF, the Old Fort Bank and the Attica Hub for their promotion of the event and to Hempy Water, McDonalds and Taco Bell for their donations!  Also, my awesome Mother was a HUGE help working with us in the extremely high temps.  We literally “poured” through the lemonade!  I can’t even describe the warmth felt in my heart while chatting with our friends, colleagues, my students, family, acquaintances and strangers who stopped by to contribute to the fund.  Christi poured out the lemonade, but it was those who attended who “poured out” their love for this little girl and for others fighting this wicket beast.  The lemonade stand raised $1,382.76 which has been mailed off to Alex’s Lemonade Fund.  Unbelievably generous!  THANK YOU, all!!   She also had a visit from our US Congressman -Paul Gillmor. 

The Scott’s book “Alex and the Amazing Lemonade Stand” has been reprinted.  It features the same great story, but now includes Alex’s photo, a bright new lemon yellow cover and quotes by famous people.  (At least that’s what Alex’s Mom, Liz, told me.  She said that there were famous people quoted such as:  Matt Lauer, Hilary Storm, and a wacky teacher from Ohio – HEY!!!!  That would be me!!!)  Far from famous, but totally flattered nonetheless to see my name on the book jacket as a teacher endorsing this wonderful book. 

There is no doubt in my mind that Christi is still here and thriving due to her “sweet” little friend from Philadelphia – Alex Scott.  Due to Alex’s work, Christi has benefited by participating in clinical trials which monies from Alex’s Lemonade Fund helped open.  And due to funds from Alex’s Lemonade Fund more children have been able to participate in these clinical trials.  Recently, I was asked if this was a good organization to support and I responded wholeheartedly, “YES!!”  While some organizations help families themselves that’s just plugging the dike – it is the CURE that is desperately, desperately needed and that will only come through research studies.  The tools in place will not currently cure Christi or other children with NB relapsed and refractory disease; new tools will come about through research.  We just hope and pray it’ll be in time to save Christi’s life and we do believe Alex Scott is a child of God looking down from heaven protecting Christi.  Pediatric cancer research is severely under funded in our minds and we are most appreciative and incredibly grateful to all who have helped increase the research funding.

This afternoon Shayla had surgery at our local hospital to have tubes put into her ears.  She’s had hearing loss and many ear infections and a lot of horrible ear pain recently so we hope that they do the trick this time.  The doctor informed Shayne and I today in the waiting room following her surgery that she did have a small tear in her right ear drum from all of the fluid build up, but she should be fine now and he expects her hearing to be fully restored.  It seemed very odd to see little Shayla in the big hospital bed instead of Christi!!  Shayla was a real trooper at the hospital and I think she actually enjoyed being the child getting all of the attention, instead of her big sister for a change.  Christi coached her on how to get the poke in her arm.  “Simply use your imagination and pretend a butterfly is landing on your arm and you’ll feel one little prick and that is that.”  Funny how Christi’s very confident and brave around needles…………when they’re not going into HER arm!!  (hee hee)  Thank you, dear Lord for being with Shayla and all of the great doctors and nurses today and always.

A few more of my “Cherished Moments of the Month”: 

  • Learning that Shayla had also received the Student of the 3rd Quarter was a very pleasant and shocking surprise.
  • Our whole family, along with “Webby & Wife”, watching the Preakness race and cheering on Afleet Alex to a first place win after a stumble that should have sent them both to the ground.  And being surrounded by our Columbus COSI friends again cheering Afleet Alex on to a first place win at the Belmont Stakes!!  Money from this awesome horse’s compassionate owners have pushed Alex’s Lemonade Fund over the $2 million mark.  (At this point a year ago, the fund was just over $200,000.)  Christi has really enjoyed cheering on Afleet Alex at every race and we are so fortunate that for all three of the races we were in our own living room surrounded by friends and family.  What fun!  How blessed we are!!  www.afleetalex.com For her lemonade stand, she ran to her bedroom and brought me a brown plastic horse – to represent Afleet Alex.  Very touching!
  • Finishing the most challenging class I’ve ever taken (Whew!) and knowing I have a couple of weeks off before my next course begins at Ohio State .
  • Learning how to French braid Shayla’s hair.  (Christi isn’t into “girly stuff” and won’t let me do her hair, but I’ve been having a blast with Shayla’s and I’m about to attempt corn rows on it next.)
  • The Dance Unlimited’s dance recital with Christi and Shayla dancing on stage at the Ritz Theatre with their dance friends leaves great memories in my mind.  We thank the many friends and family who came to watch the tu tu action!  As a parent volunteer at the recital I was literally inches on the other side of the curtain on Sunday afternoon mesmerized by watching Christi dance.  When I looked at her now 8 year old face beaming out at the Ritz audience complete with such a strong - “lean and mean” body and that distinct look of determination, I could actually see the same determined look I saw when she was five years old - filled with pain from a cancer that has metastasized to every part of her body and trying hard not to die.  I could see that same “look” as she danced with gusto in her beautiful little tutu yesterday afternoon.

Finally, I end with terribly sad news.  A darling little four year old boy who captured our hearts at the NB conference in Chicago last year earned his Super Hero Angel Wings in late May – just about a week after his Make a Wish trip to Disney World.  Our little Super Hero, Jake Widman, was especially near and dear to our hearts as both of his wonderful parents work for Abbott Labs – yes the very company that makes ABT-751; the drug that has been working miracles for Christi’s cancer by keeping it “stable” for 14 months.  ABT was the same drug the Widmans desperately hoped to get for their own son, yet couldn’t get through the paperwork nightmares in time to even try it.  How painfully tragic!  Super Jake was a Super Hero fan and on the day of his funeral his parents asked for folks to wear their favorite Super Hero costume to the funeral so when Shayne left for work that day wearing his Superman Tee Shirt I expected him to come home unemployed by noon, but he didn’t.  And the girls always look like Super Heroes in their “Incredible” tee shirts (Thanks, Karel!).  We know Jake loved it!  Jake was diagnosed with NBIV in March of 2004 and recently relapsed with this relentless beast.  His website is in Christi’s Clubhouse if you’d like to leave a message of condolence with his most wonderful and beautiful family left back here on earth where life will never be the same.  They are in our prayers.

Our prayers are also with a little angel we never met, but followed her journey with neuroblastoma quite closely.  (She was diagnosed about a month after Christi and beat the disease, yet died from complications from her stem cell transplant.)  Rest in peace, sweet Emma Grace!  “Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these”. (Matthew 19:14)

As always, thanks for checking in and for your continued love and support!  We’ve been blessed!! 

Until we have the final test results and I post in mid-July, take care and thank you!

With love and thanks,
Angela - the Thomas team Mom

PS:  If we receive good news in July, it is my intent to move to only posting journal updates every two or three months since there isn’t really much medical news to share these days.  (That’s a GREAT thing!)

Christi’s Joke:  If you eat it when it’s cold, why do they call it chili?

And why do sharks swim in salt water?  Because pepper makes them sneeze!

What’s Next?  She’s on round #14 of her ABT-751 (the oral experimental Phase I chemo) made by Abbott Labs which has surprisingly held her disease steady for roughly 14 months and from which she has experienced extremely minimal side effects. On her one week off of treatment this month we shall travel to NYC to visit with some very special friends we’ve dearly missed since our treatment days ended there in August of 2003 – the day of the blackout to be exact!! 

We’ve received emails, letters and phone calls setting up times to get together including those from: Christi’s favorite nurse (talented and delightful Gail), Christi’s MSKCC hospital teacher (the Amazing Anne Marie – World’s Greatest Teacher) and from the brilliant oncologist Dr. Kushner – all happy to learn that she’s returning to NYC and will be visiting very soon.  Also, the great folks from the Met (beautiful and brilliant Caroline and Nitza) have arranged to get together with our family and Shayla’s preschool friend’s family (the Magnificent Marks).  We also hope to meet William who has been a tremendous support and prayer warrior for our entire family and many others we can squeeze into the schedule including Harrison and his Mother, Gina.  Yahoo!  I’m hoping to get to catch up with an old friend, Kristin, as well as catch up with other neuroblastoma friends from our NB listserv support group.   In addition, the girls’ list of NYC “must do’s” is growing by the day.  Near the end of school, Shayla’s assignment was to draw a picture about what she was looking forward to about summer.  One look at her art and Shayne and I immediately could see the many high rise buildings as we said, “ New York City ” and she said, “Yes!  I’m going to New York !”  I’m certain our short 2 ½ days in the city will fly by; I guess we’ll just sleep later (hee hee) or at least the girls and I will sleep while Shayne is driving us (smile) down to Philly for the real reason we’re heading out to the east coast – the results which can turn your life upside down in a matter of seconds, the thing that puts the most fear in our minds – the dreaded and nerve-wracking tests and scans.  I know she still has a substantial amount of cancer still circulating throughout her body and I pray that her cancer is not any worse!!  Many times over the past 2 ¾ years of this battle, I have listened to her cry during her procedures and many times I have placed my head upon hers and fought to keep my tears from joining with hers.  May she have no new areas of cancer?

Yeppers, tension is already building as we fear the worst and pray for the best.  How I’d love to hear NED (No Evidence of Disease) and have Christi cut off this beaded “necklace” that has plagued my neck (although made with love on the day of Christi’s diagnosis – 9/11/02) for nearly three years.  (I promised her the day she made it with her tiny five year old hands that I wouldn’t take it off unless it broke or she was cured and boy did Columbus Children’s have some strong string in the playroom that day!  Hee hee).  I can’t even imagine we’d ever get to hear that fabulous news of NED and her LDH level is not normal and it is increased a bit, so instead I find myself on my knees praying for stable disease once again.  That would be a tremendous blessing!

Prayer Request:  That our loving supporters will know how much their prayers and kind wishes and deeds have helped us throughout this long journey now going on three years!  That Christi’s test results will indicate no new areas of cancer and that folks everywhere are comforted by God’s love regardless of their circumstances.  We pray that we will have the strength to carry on and to provide our girls what they need regardless of the news we receive in Philadelphia very soon.  Lord, please hear our prayers.

THE BIG 'C'

The big 'C' I heard someone call it.
another just whispered the word.
That we don't even dare to say "cancer" out loud
gives it power it doesn't deserve.

So I'm giving that letter new meaning
And refusing to give in to fear
By reclaiming the power for you and for me
And by saying these words loud and clear:

Let the "C" be for "Cure" and "Compassion."
Let it stand for the "Candles" we light,
And a "Chorus" of voices shouting, "You 'Can"!
To all who will take up this fight.

Let the "C" be for "Cash Contribution"
 ("Credit" or Check" will work, too.
Let it stand for "Commitment" and Checkups"
   and "Cheer,"
And the "Children" "Counting" on you.

Let it mean that we know our "Creator"
Is beside us each step of the way,
And remind us to "Call" on His strength and His
    love
And to "Celebrate" every new day.

To everyone facing this "Challenge,"
I say it's a fight we can win.
Tell all who will listen that, starting today,
The "C' is for "Courage," my friend.

By Kathy Cawthon, cancer survivor

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